Questioning assumptions on disability

Earlier this year ABC Ramp Up Editor Stella Young was invited to present at TEDxSydney 2014, which was held last week. It was an incredible opportunity to raise disability issues with TED's global audience.

TED is a US enterprise that aims to propagate 'Ideas Worth Spreading' centred around three worlds - Technology, Entertainment and Design. Since 1984, a TED conference has been held annually to bring people together and support world-changing ideas. TEDx, an off-shoot of the original concept, has allowed similar events to be organised in other countries.

TEDxSydney 2014 was a sold out event held on 26 April at the Sydney Opera House. Some 2,200 attendees came to hear and watch 16 speakers deliver presentations on the themes of 'Passages', 'Blood', 'Enhance' and 'Rethink'. The full program was streamed live by ABC Extra digital radio and ABC Big Ideas TV.

Below is an edited transcript of Stella's presentation, based on a topic familiar to the ABC Ramp Up audience - inspiration porn.

I grew up in a small country town in Victoria. I had a very low-key, normal upbringing. I went to school, I played with my friends, I fought with my sisters.

When I was 15, a member of my local community approached my parents and told them she wanted to nominate me for a community achievement award. It was a pretty small community, and I was a pretty conspicuous member of it. My parents said to this woman, "Thanks, but there's one glaring problem with that... she hasn't actually achieved anything out of the ordinary."

They were right. I was going to school, I was getting good marks. I had a very low key after-school job in my Mum's hairdressing salon, and I spent a lot of time watching Buffy the Vampire Slayer and Dawson's Creek. I know, what a contradiction! But I really wasn't doing anything exceptional. I was doing nothing that could be considered 'an achievement' if you took disability out of the equation.

Years later I was on my second teaching round at a high school in Melbourne. Twenty minutes into my year 11 Legal Studies class, a young man put up his hand and said, "Miss, when are going to start doing your speech?" I said, "What speech?" I'd been talking to the class about defamation law, so I'd been already been speaking for quite a while. He said, "Like, your motivational speaking. When people in wheelchairs come to school, they say inspiring stuff... and it's usually in the big hall."

And then it dawned on me. This kid had only ever experienced disabled people as objects of inspiration. For him, and for most of us, disabled people are not our teachers, or our doctors, or our manicurists. They're not real people in our lives. It wasn't this kid's fault that his only interactions with disabled people had been as motivational speakers. That's true for a lot of us.

And you might have come here today expecting that from me too. You see me here, on this stage, in my wheelchair. You're waiting to be inspired.

Well, ladies and gentlemen, I'm afraid you're out of luck. I'm not here to inspire you. I'm here to tell you that we've all been lied to. We, and I include myself in this, have been sold the lie that disability is a Bad Thing. Capital B. Capital T. It's a Bad Thing and to live with it makes you exceptional. It's not a bad thing. And it doesn't make you exceptional.

In recent years with the explosion of social media we've been able to propagate this lie even further. You might have seen images like the one with the little girl with no arms drawing a picture with the pencil in her mouth. The one with the boy running on prosthetic legs.

These images are what we call 'inspiration porn'.

And the word 'porn' is deliberate, because they are images that objectify one group or class of people for the benefit of another. In this case, it objectifies disabled people for the benefit of the non-disabled.

They are designed to motivate. To get non-disabled people to put their worries into perspective. So we can say, "Oh well if that kid in a wheelchair can play basketball and have a good time, I should never, EVER feel bad about my life". These images are used so that non-disabled people can look at us and think "Well, it could be worse... I could be that person".

But what if you ARE that person?

I've lost count of the number of times I've been approached by a stranger and told that I'm an inspiration. This has happened for years, long before my work had any kind of profile. And it still happens. I'll be minding my own business and people will want to tell me I'm brave. I've even had people tell me that they couldn't cope if they were like me.

And I understand. It's because of the lie. That disability makes you exceptional.

I understand that people mean these things as compliments, of course. But they don't sound like compliments. The subtext of being told that you're brave or inspirational for getting out of bed in the morning and remembering your own name is clear. The inherent assumption is that my life is harder than theirs. That it's worse than theirs. That it's worth less than theirs.

Let me be clear. Life as a disabled person can be challenging. And I use the term disabled person and not 'person with a disability' because I subscribe to what's called the Social Model of Disability.

In a nutshell, the Social Model tells us that we are disabled far less by our bodies and our diagnoses than by the society we live in. As a clear example, my disability has less to do with the fact that I can't walk than it does to do with a lack of ramps in the environments I move in.

That quote, "The only disability in life is a bad attitude."

Nup. 'Fraid not. There is no amount of positive attitude that will melt a flight of stairs and make a ramp suddenly appear. No amount of smiling at a television screen will make Closed Captioning appear for those who can't hear. No amount of standing in a bookshop and radiating positive vibes is going to magically make all those books suddenly available in Braille.

So, yes. Life as a disabled person isn't all beer and skittles. But that is largely due to social factors. To the barriers that exist quite separately to my physical body. I've lived in this body a long time. I've learned to navigate the world in it. I've learned to use it to the best of its capacity. Just as you have yours.

That's the thing about these kids in these pictures too - they're not doing anything their peers don't do. We all learn how to use the bodies we're born with, or learn to use them in an adjusted state, whether those bodies are considered disabled or not. So that image of the kid drawing a picture with the pencil held in her mouth instead of her hand? That's just the best way for her, in her body, to do it. For her, it's normal.

And that quote tells us disabled people that we HAVE to be positive. We have to smile and be grateful. Disabled people who fail to be positive at all times are dismissed as bitter.

I know what you're thinking. What's wrong with being inspired, Stella? Aren't I inspired by some things too? Of course I am. I'm even inspired by other disabled people. I learn from my peers all the time, just as I learn from non-disabled friends. But I am not learning how lucky I am in comparison to them.

I'm learning that it's a genius idea to use kitchen tongs as an extra reaching stick. I'm learning the trick where you charge your mobile phone from your chair battery. We are learning, from each other, strength and endurance. Not against our bodies, but against a world that exceptionalness and objectifies us.

These images capture our hearts because they confirm what we think we know about what it means to be disabled. We are taught that disability is a deficit. This prejudice is so ingrained in our culture that it feels uncomfortable to question it. Perhaps what these images do most effectively is reassure us that to not be disabled is a superior state of being. They make us feel comfortable in assumptions we've held our entire lives.

I want to live in a world where a 15 year old girl watching Buffy the Vampire Slayer in her bedroom until all hours of the night isn't an inspiration just because she's doing it sitting in a wheelchair. I want to live in a world where we value genuine achievement for disabled people. I want to live in a world where a student in a Legal Studies class of a Melbourne High School is not one bit surprised that his new teacher is a wheelchair user.

Disability does not make you exceptional. But questioning what you think you know about it does.

Disability is not simple. It can't be summed up in a cute little image with a trite quote. But we can begin to question what we think we know.

You can watch the video of Stella's presentation by clicking on her image here.

Karen Palenzuela is Sub-editor and Producer of ABC Ramp Up.

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Comments (10)

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Denise :

17 May 2014 4:56:41am

I just saw Stella's speech this morning and immediately thought, "YES!" Why am I inspirational simply because I manage to hold down a job and pay my bills? Because I use a wheelchair to do it? That doesn't make me inspirational. I'm not curing a disease. I'm not finding a new way to save the planet from greenhouse gasses.

Until we stop viewing disability as a fate worse than death, I will continue to share her video with others in the hopes that thinking may shift. And I will continue to call people out on social media when they post inspiration porn.

Brian :

10 May 2014 2:07:07pm

People have an image in their minds of someone who is disabled, it could be loss of a limb, a wheelchair or a walking stick like myself...The problem is when I lose the stick I look like everyone else and have been questioned about my disability.

I'm 48 and have Congenital Lumbar Spinal Stenosis but instead of succumbing to it I have fought it for 22 years and now have no treatment options left, people around me and online question that the most by saying "Surely there must be something that can be done"...The wheelchair I will use for the rest of my life has been chosen and will be used because I can no longer walk without chronic pain...There's the real disability...Chronic pain...I have adjusted every part of my life to cope with a degenerative spinal condition but because people can't see me crying in the corner of hunched over like a cripple they think it can't be that bad...Trust me!...It's bad and I was bitter for a decade and played it down regardless of what the doctors said...I get it now, I've excepted it for what it is, I embrace it, I use it, it's what now makes me who I have become over the last decade.

I'm on a DSP, my wife is my fulltime carer and my kids 16 & 18 are both at college and know me as nothing else but their dad, we joke about it, we laugh about it and we most definitely cry about it...I lost everything when I was diagnosed except a couple of things...My dignity and my pride...With those two things intact you can do anything...I lost my job, my study, sport, social life and the list goes on and just recently the ability to walk to my own letterbox without being hunched over like a deformed freak, you know!...just like the government want to see me looking like.

You can read a thousand articles by a thousand different disabled people and get a thousand different opinions on how to act and cope and deal with people and blah blah blah...It's individual, It's already inside you, it's just another one of life's little challenges and only you can say if you will face it head on or crumble in a heap...My next challenge is to head out into the big world in a wheelchair and not be treated like a second class citizen while not coming across as a sympathy case...That's not me...I've always been positive but my bitterness has now turned into something a lot more ballsy.

Lastly I will say that even up to a few years ago I wouldn't have read this article let alone write something but Stella does stand out in a crowd or on TV and made me listen and except my disability...I already questioned everything in general and now want to know why I can't go somewhere because my chair doesn't fit etc...If she doesn't want to be called an inspiration that is fine by me, but she is one lady who has lived it and to me she is worth listening too...Cheers.

lauredhel :

Chris F :

02 May 2014 5:26:11pm

I Love most of Stella's work - here, online- but I don't always agree with her. Not coming from a 30 Something age group gives me a different perspective. I have a Very different useage for the phrase : "The only disability is a bad attitude." ; one that calls ppl on their bs & demands Respect, instead. ...& funny thing is- I come from the world that Stella says she would like to see. I grew up in the :"See the person, Not the wheelchair" - Generation. A decade (ouch! ) Before that, my High School Music teacher had a limp, barely functioning hand on a short arm. ( don't know the medical term)... but our Consciousness was such that - we were Not Blind to it & yet it was Secondary to the Task @ Hand : We learnt our Music stuff & he was a very Talented Trumpet player who led the school band & he had his own Rock band - whenever he had the time. Our Focus was on the music, for sure - but sometimes we would ask Curiousity questions - like :"How do you drive UR car?"- We found the Answer quite fascinating- the steering wheel was modified for one handed driving. Sorry, that came out longer than intended. :)

BenH :

02 May 2014 2:48:45pm

I totally understand where you're coming from Stella, and agree that simply being, and going about your daily life with a disability doesn't make you "inspirational" - a word I hate, I find the word inspiring more user friendly, though still out of context in this regard.

To be told by someone that doesn't know you, only knows a small part of your story, and who is empowered to contribute to making a difference that you are inspirational is nothing short of insulting and patronizing, especially since he seems determined to delay or water down the NDIS.

I agree as stated before Stella, you are an ordinary person living with the frustration and difficulty of your disability, it is your daily reality and nothing can change that.However I want you to know that in your role as editor of Ramp Up; your stance as spokesperson for those with disability, and your continuing campaign for rights, dignity and change, that is what does make you inspiring.

Too many people want to complain that they have it tough, but unlike you, most aren't willing to get on a soap box, agitate, start a discussion or argument, and make sure the awareness level in the community is increased.

I'm not inspiring or inspirational.I'm just a stay at home carer for a spouse with CP who gets about in a wheelchair. She goes to work and keeps us fed, whilst I battle with inner demons, PTSD, Anxiety, High Functioning Autism, low level OCD, and the increasing awareness that I may be Bipolar; as Depression seems to be the tip of the iceberg.I struggle with self acceptance, stigma, and being ostracized by my family, both because of my own difficulties and my choice of spouse.

I disagree with you on some things Stella, including your views on Euthanasia, but the other thing I disagree with you is that you are not inspiring.You are flawed and human like the rest of us, but you transcend your difficulties to fight for what's right, and most don't have the nerve, stamina, or determination to do that. That isn't inspirational porn, that's inspiration.

BenH :

12 May 2014 2:29:24pm

Thanks Heather, that makes two people that enjoy reading my comments, you and presumably Stella (otherwise they wouldn't get posted now would they)?I guess I don't write too poorly for someone who never finished high school.

I indeed may be all those things, Bipolar, Aspie, PTSD sufferer (but not from armed conflict, more from repetitive abuse and exposure to unpleasant experiences), as well as a carer, husband, driver, cook, cleaner, etc, but I am still left with a feeling of somehow being left out, disenfranchised, and ignored.

Perhaps that's why I am so keen to comment on these articles.I may not myself have a physical disability (though goodness knows I certainly feel I could be categorized as having a psychological and neurological disability etc), but I can certainly empathize with those who do suffer with disability (not from); clearly the suffering comes from unmet needs, lack of acceptance, lack of appropriate support, and lack of acknowledgement of one's value, merely due to differing capabilities, be they physical or mental.

Clearly also, the current government's penchant for cutting spending on welfare, pushing the disabled off DSP, and trying to force those with disabilities in to work (where in fact there are few if any jobs, and not enough supportive employers that are willing to employ those with disabilities and meet their needs) is a massive step backward, for a government that says publicly they support the NDIS and will deliver, whilst failing to instill the public with confidence.

I look forward to the day when acceptance (both personal internal, and external and social), are simply expected, and not something that needs to begged for, or requires awareness campaigns and lobbying.I don't expect this day to come in my lifetime, but if it did, at least I'd get to see the world the way it should be, and not as the impediment to my, and many others happiness that it so often is, due to the crime of "being different".

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